IPPF News and Information

Guidelines

The goal of this discussion group is to provide information and support to those living with, and suffering from pemphigus/pemphigoid, and/or their families, friends, etc.

1. The acceptable topics for this e-mail discussion group are limited to pemphigus/pemphigoid and its associated treatments, side effects from treatments, support, encouragement, and non-medical advice. Because of the wide cultural, religious and ethnic diversity of the members of the group, topics such as religion and politics WILL NOT be discussed. For similar reasons, jokes about sex, religion, politics, ethnicity, etc. are also prohibited.
2. Matters of personal disagreement are to be handled individually and privately in a respectful manner, OUTSIDE the public discussion group. Insulting, harassing or defaming anyone is not allowed. On occasions where potential offense may be taken, responsibility lies with both parties to keep the discussion group on topic.
3. All information posted in the discussion group should remain within the discussion group and be treated as confidential. It should not be posted in any other forum, i.e. cross-posting to other lists is not allowed.
4. Copying a short excerpt from a web site is acceptable provided the source is correctly identified and a link to the source site provided. Copying long passages or a large amounts of material from another web site is not allowed without the permission of the original author. Anyone who violates this rule will be sent a private e-mail advising him/her what is acceptable. If there is any doubt, then it's probably too long and the best thing to do is to direct people to the original site. Also note that attachments are not allowed due to potential problems with computer viruses.
5. The discussion group is not a forum for grievances about how the International Pemphigus & Pemphigoid Foundation is run. All comments about the administration of the Foundation should be sent to the Chief Executive Officer who will forward them to the Board for review if necessary.
6. If anyone forwards to the group, without permission, all or part of a personal e-mail to the group that was meant for their eyes only, that person will be warned privately that this is unacceptable. If that person does it again, he/she will be removed from the group (unsubscribed). Forwarding personal e-mail is an unacceptable breach of confidentiality.
7. These are simple rules by which everyone should be able to abide. They are provided in order to protect all individuals seeking information and support. If these rules are broken, the Group Administrator will send an e-mail PRIVATELY with a reminder of the rules of the group and that breaking these rules could mean removal from the group. If the problem continues, a second (and final) warning will be issued - but there will not be a third one. If any rules are broken again, the person will be removed (unsubscribed) from the group.

If you have any questions about these guidelines, or for more information, please contact the IPPF.

These guidelines protect the individual members of our group, as well as the Foundation. Membership in this discussion group is a personal choice. Anyone may sign themselves off the group if they do not agree with these guidelines and are not willing to follow them.

How to Join

Use these addresses to participate in the online support group:

To subscribe to the e-mail discussion group:

Send a blank message to:

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(NOTE: this goes to a computer, nobody in the group will see it.)

To unsubscribe from the e-mail discussion group:

Send a blank message to:

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To write to the group:

After you have subscribed, to post messages to the group, send a message to:

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(Introduce yourself!)

If you are having trouble, have a suggestion on how we can improve our service to you or just want to drop us a note, please do. We appreciate you taking the time.

Replying to messages:

When responding to messages posted to the group, please be aware that the "reply" button in your e-mail program will return a message only to the individual who posted the message. "Reply all" will send a response to the sender AND the group, which results in 2 duplicate messages for the individual who posted the original message. Most often, the most appropriate reply will be only to the group address ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ).

Occasionally, private messages are appropriate, but please keep in mind that the object of the group is to help and learn from each other, and responses to queries presented to the group are often beneficial to the entire group.

Temporarily signing off/on:

If you are going to be temporarily away from your email and you do not wish to receive the group's email while you are away, send a blank email to:

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This will temporarily suspend you from receiving the emails without having to go thru the complete sign-off/sign-on process. When you return and would like to resume your participation in the group, send another blank email to the same address.

If you have any questions about joining the group, or for more information, please contact the List Manager at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Archives

All messages posted to the discussion group (beginning September 11, 2003) will be saved in the discussion group archive. In the interest of making the archive a useful and valuable resource, please keep the following in mind as you contribute to the discussion group:

1. You can only read on the archive site. To respond you must use the email method.
2. PLEASE USE DESCRIPTIVE AND MEANINGFUL SUBJECT LINES. This makes searching by subject accurate and useful.
3. Once a message has been posted to our email group it takes about 30 minutes for it to appear in the web archive.

To enter the site the user name is "discussion" and the password is "monday" – Note that both of these words are lower case (and don't enter the quote marks). These messages can be sorted by date, subject or author and/or searched by the provided search tool.

The archive website is: http://archive.mail-list.com/discussion.

If you have any questions about these guidelines, or for more information, please contact the IPPF or call (916) 922-1298.